A new exhibition called Beyond the Lab will open at the Science Museum on Thursday, showcasing a cross-section of contemporary biomedical initiatives in Europe. The exhibition will feature the work of seven European scientists conducting urgent research with cutting-edge applications, with the significant additional factor that most of the individuals at the heart of the projects are not, in the purest sense, scientists.

Amateur scientists, rogue scientists: the terms conjure up images of shed hobbyists and dangerous lunatics – Breaking Bad and Frankenstein. We feel more comfortable imagining science as the exclusive preserve of lab-coated professors in well lit, publicly funded laboratories, surrounded by gleaming, expensive apparatus. In truth, though, the history of science is rooted in research carried out by independent devotees, driven by resourcefulness, passion and curiosity.

There’s a whole world of people who self-identify as bio-hackers or DIY biologists

Louis Buckley

“The great bulk of scientific activity takes place in large commercial enterprises, government laboratories and universities,” says David Edgerton, Hans Rausing professor of the history of science at King’s College London, “but there have always been people who have done scientific research off their own bat: people who haven’t been employed by an institution or a firm. You could argue that Charles Darwin was such a person.” Edgerton says an amateur subculture is nothing new in science and that this applies especially to inventors, where there is an “important tradition” of outsider activity. Perhaps the contemporary manifestation of this upstart tradition is the hacking community, where people create and share their own open-source technology and software.

It is easier to picture amateur or semi-professional pioneers making groundbreaking discoveries outside the confines of official institutions in the distant past of science, before electron microscopes, big data and quantum computing: the polymath Benjamin Franklin, the monk Gregor Mendel, the enthusiast Ada Lovelace.

According to Louis Buckley, however, the exhibition’s project leader, “the possibilities for taking science into your own hands are greater than ever”. This is due in large part to the internet, which has provided access to swaths of research and educational resources, while fostering groups of curious and like-minded autodidacts.

“There’s a whole world of people who self-identify as bio-hackers or DIY biologists,” says Buckley, and that world is represented, in the exhibition, by the story of Pieter van Boheemen’s laboratory in Amsterdam. The Open WetLab is an unusually ambitious community science workshop, welcoming hobbyists, students, artists, amateurs, the retired and anyone else keen to turn their hand to “creative biotechnology”. The small facility is kitted out with secondhand instruments and homemade apparatus, but van Boheemen believes it can produce meaningful results, even in the search for new antibiotics.

The story of van Boheemen’s lab forms part of DIY Biology, one of three sections into which the exhibition is divided. The other two sections deal with citizen-science projects and stories of patients’ innovation. Citizen science, in which the public takes part in large-scale data-gathering experiments – annual butterfly counts, online astronomy surveys, etc – is perhaps the best known version of non-professional scientific activity, with thousands of participants in the UK alone.

Shazia Ali-Webber’s I Like Clean Air project is described by Buckley as “citizen science in a more radical form”. A former lawyer living in Hackney, east London, Ali-Webber became concerned about pollution affecting her family, and began monitoring the nitrogen dioxide levels on her street. Her local experiments have snowballed into a London-wide campaign, fuelled by her own data, and she is now energetically lobbying government to take action on clean air.

Ali-Webber’s story of personal empowerment demonstrates the potential of engaging with science as a non-professional, but the final section of Beyond the Lab questions the boundaries of that engagement, telling the stories of patients with chronic diseases taking an active, interventionist role in their own treatment. The individuals convincingly argue that they are the most qualified people to take charge of their own medical care, yet they have both encountered resistance from medical professionals concerned about the safety and wisdom of their approaches.

This more controversial aspect of the exhibition brings to light the stark contradictions in our relationship with the scientific status quo: for scientists to operate effectively, we must put our absolute trust in their superior expertise, but for us as individuals, when we learn about the ways it comes to bear on our lives, science is a thoroughly personal matter.

Sara Riggare: fighting Parkinson’s

Sara Riggare: ‘I’ve had several clinicians tell me the way I interact with my condition has slowed the progression of my disease.’ Photograph: Angela Moore, courtesy of the Science Museum.

I had my first symptoms when I was 13, but I didn’t know it was Parkinson’s disease until 13 years ago, when I was 32. At that time, I was a chemical engineer, but I changed my career in 2010 and began a PhD at the Karolinska Institute in Sweden, doing research in the area of digital self-care for Parkinson’s – I wanted to help myself and others.

I started thinking more about my condition and how I could understand it better, but it’s not easy to measure Parkinson’s effectively. Then in 2011 I heard about a finger-tapping test being used as a proxy for measuring the effects of medication in Parkinson’s.

Once you start being an active patient you gain confidence, you improve and understand your condition better

Sara Riggare

I figured I might be able to use that test on myself – how many taps can I do in a certain time? – and that’s when things really kicked off.

Building on that test, I have several times been able to optimise my medication timing to match the fluctuations of my condition and to find the right dosage in a more systematic way. I also track my sleep and my activity levels and I use the data to inform visits with my doctor.

I’ve been with the same neurologist for 20 years. If he hadn’t been so encouraging, I probably wouldn’t have continued, but he says I know more about Parkinson’s research than he does.

Healthcare for chronic diseases is all about relationships, communication and mutual respect, but I do a lot of public speaking, in Sweden and internationally, and I’ve met plenty of doctors who think patients simply don’t know what they’re doing. It’s patronising, but it’s also out of the goodness of their hearts, because they don’t want to expect too much of patients who might not have the time or resources.

Patients also underestimate their own ability, which is a shame. They want to be taken care of – of course, we all do – but once you start being an active patient you gain confidence, you improve and understand your condition better, and you can also have discussions on a higher level with your healthcare professional.

I’ve had several clinicians and researchers tell me the way I interact with my condition has slowed the progression of my disease and that’s my strong conviction as well.

The first time you think: “Maybe a doctor doesn’t have all the answers”; it’s really, really scary, but once you’re over that hurdle it’s very empowering. There will be a pair of boxing gloves on show in my part of the exhibition – I do boxing to stay agile and active, but it’s also a symbol: taking the fight to Parkinson’s.

Tim Omer: Android app for diabetes

Tim Omer: ‘Some doctors struggle with the concept of people managing their own decisions.’ Photograph: Angela Moore, courtesy of the Science Museum.

Technology for diabetics has progressed a lot in the past few years. If you’re lucky enough to get hold of them, the medical devices fall into two categories: the first is an insulin pump that delivers medication through a cannula (a tube inserted into a vein or cavity); the second is the continuous glucose monitor (CGM), which sticks into your arm and gives real-time blood sugar data. I bought a second-hand CGM from eBay a couple of years ago because the NHS doesn’t supply them, and though I was intrigued, I quickly understood that we needed a better way of managing the information.

Human beings are flawed. The app makes more logical decisions

Tim Omer

The first community project that got me excited about the patient-led diabetes movement is called xDrip. It’s an Android application and some homemade circuitry that fits inside a Tic Tac box, allowing you to get the CGM data on a website or a smartphone. People have even started throwing xDrip parties, where they all sit round with soldering irons and build the device.

The other major community project is an artificial pancreas system under the title of OpenAPS – they built an algorithm that automatically adjusts the insulin pump based on the CGM. So rather than the patient monitoring the devices and making the decisions, an automated system can do it every five minutes.

I don’t come from a science background but I work in computing, so when I came on board I learned Android app development so I could take those two core community projects and build an application around them. It takes the data and makes medication suggestions every 15 minutes on my smartwatch. It takes the full decision-making away from the patient, but asks the patient to acknowledge and action the decisions.

Human beings are flawed. Sometimes, my blood sugars might be high, but my app will tell me to turn my pump off, which is the opposite of what I would normally want to do. The app knows that I’ve got plenty of insulin in my system that will be active in the next few minutes and if I have any more I’ll crash. A human being can’t make that logical decision; when you’re battling with everyday life, you don’t sit there with a pen and paper working out your blood sugar levels.

Doctors’ feelings about the community technology fall into two categories: either they’re excited by having patients who are pro-actively engaging with their condition or they feel threatened and struggle with the concept of patients managing these decisions without official support. But the barriers are going: technology and information are freely accessible, hardware is cheap and people are passionate about better quality of life. The patient-led movement is going to proceed, we just need to be knowledgeable about the risks.

Shazia Ali-Webber: I Like Clean Air project

Shazia Ali-Webber: ‘Real data is the most powerful thing if you want to raise awareness.’ Photograph: Angela Moore, courtesy of the Science Museum.

My husband’s asthma deteriorated a couple of years ago and his consultant told him that living in Hackney, east London, was bad for respiratory health. I was pregnant with our third child at the time and we have a family disposition to asthma, so I started looking at the impact of pollution on adults and growing children. We have to cross a very busy junction on the route to school, where we have to stand on a traffic island two metres from car exhaust pipes – that’s what my baby in his buggy is breathing every day.

Because of my anxiety, I wanted real data and I’d read an article about ClientEarth, the legal team responsible for suing the UK government on air pollution levels. Its community officer told me about diffusion tubes for measuring nitrogen dioxide (NO2) – the pollutant responsible for the health issues arising from air pollution.

Diffusion tubes are tiny glass tubes with a gauze mesh at the top end. You uncork them to allow the air in, hang them around two metres high on lampposts, gates, wherever you want to measure air quality, and leave them for four weeks. They then get sent to the lab to analyse the particles trapped inside.

We ran our first tests in September 2014 around four primary schools in south Hackney and then expanded it to include four more. Then we repeated it in February 2015, plotted the results on maps and distributed them at the school gates. We found that almost all the streets we tested were breaching legal air pollution limits for the whole year.

The EU states that a given street can’t go over 40 micrograms per cubic metre (g/m³) of NO2. We had findings of 108g/m³ outside Hackney town hall and it’s even higher in some other areas. We’ve got a big, big problem and I wanted to make sure that parents had access to concrete data because it affects their children’s health. That’s not speculative – a study a few years ago called Exhale found categorically that exposure to high levels of NO2 in early childhood affects respiratory growth.

Two weeks ago, I took a group of 24 children to the House of Commons; the next step is to contact the 403 schools across London in areas of high air pollution. If you want to raise awareness, the most powerful thing you can do is get real data, real science. People are too intelligent; otherwise, they’ll question what you say. Once you’ve shown them objective fact, then you can begin political campaigning. That’s why I think citizen science is only going to get more and more important; it will become an essential part of modern life.